IPA D&I envoy, Michiel Kolman interviews Elsevier’s Simon Holt and Springer Nature’s Kirsty Bone about their experiences of having a disability and working in the publishing industry. This is a long but fascinating read.
Simon Holt is a Senior Acquisitions Editor at Elsevier, and a disability inclusion activist within the publishing industry. He is co-chair of Elsevier Enabled, a group that represents employees with disabilities across Elsevier, and also sits on the SSP’s Diversity, Equity and Inclusion committee as well as the Scholarly Kitchen Cabinet. He is visually impaired.
Kirsty Bone is an Assistant Press Officer at Springer Nature. She is co-founder of the Springer Nature Disabled Employee Network (SN DEN), aiming to support, connect and advocate for employees with disabilities or impairments, and those wishing to support others. She is mobility impaired with chronic pain.
MICHIEL KOLMAN (MK): Thank you both for doing this interview; I read this amazing Scholarly Kitchen article and wanted to hear your views on diversity and inclusion through the lens of disability.
Definitions and being defined
MK: When I talk to people who are less familiar with diversity and inclusion, they can feel insecure with which terms to use, and then not say anything. When we talk about colleagues with a disability what are the kinds of terms that make you feel comfortable or uncomfortable?
SIMON HOLT (SH): In the UK, the 2010 Equality Act classes someone as having a disability if it has a ‘substantial and long-term negative impact on your ability to do normal daily tasks’. That's a good basis because it covers a whole range of things, whether those are physical or neurological, and it can be quite self-selecting. Personally, I like to say I have a disability but I don't like to describe myself as disabled, and I certainly wouldn’t use old fashioned terms like ‘invalid’. ‘Am’ denotes a status that defines someone, whereas ‘have’ denotes a third-party thing, that doesn’t define a person. Disability is something that has happened to me, but isn’t all I am. When I talked to other people in Elsevier Enabled [Elsevier’s disability employee group], they agreed with that, which is why a lot of people in the disability community don't like the wheelchair logo, for example, because first of all it excludes a lot of different types of disability but also it projects a rather disempowering image. ‘Disability’ and ‘disabled’ are not quite the same thing. The same goes for impairment and disability. Impairment is the symptom and disability is the cause. I am visually impaired (symptom), and the cause is that my optic nerve didn’t develop properly, which is the disability part.
KIRSTY BONE (KB): I completely agree and also don't self-identify as being disabled but as someone with a disability. I think it is also important for people to feel included when we talk about disability in publishing not only if their specific impairment is ‘officially’ classed as a disability. For example, Ehlers Danlos Syndrome, which is a condition I have, is not always categorized as a disability, but it significantly impacts my daily life.
MK: That's good to know. In future I will say ‘colleagues with disabilities’. SIMON, what prompted you to write the Scholarly Kitchen article?
SH: I wrote this together with Katy Alexander (Digital Science) and Becky Degler (Wiley). We felt that it was important to shine a light on disability inclusion in the diversity and inclusion space which often focuses on gender, race or LGBT diversity and the Scholarly Kitchen is something that a lot of people read. We were also tired of articles about disability portraying quite negative or patronizing perspectives on people with disabilities, either highlighting limitations, or taking the belittling ‘haven’t they done well’ perspective, trying to make people with disabilities seem outstanding just for getting up in the morning. We wanted to challenge that, and present a more empowering view of people with disabilities within the publishing industry.
Having a disability has given me a lot. It has given me loads of skills that I wouldn't otherwise have. As a Commissioning Editor, success in my job is not despite my having a disability, it is because I have a disability. There are skills in terms of planning, organization, efficiency, people skills that I have gained – the upsides of not being able to read name badges or public display boards. We really wanted this empowering image to encourage the publishing community to think about disability in a different way.
I think we do amazing work in the publishing industry, but I also think disability is not very well represented. The Publishers Association (UK) 2019 survey found only 5.4% of respondents said they had a disability compared to 15% of the working age population. We clearly have a lot still to do.
We talk about accessibility a lot, which is great. We don’t actually talk about the people in the industry and we wanted to give that more attention.
KB: Although I was not an author of the Scholarly Kitchen post, it came as a really welcome addition to the current effort.
At Springer Nature, we recently launched our Springer Nature Disabled Employee network (SN DEN) in April of this year. We weren’t aware of the other groups being formed across publishers, so when we saw the post, we reached out. Since then, we have been discussing the potential for a cross-publisher working group to move the conversation about disability in publishing forward. I think it’s really important to realise, and so far everyone seems to agree, that this is not something that should be company-specific, but developments should be industry-wide. We should all be discussing the work that we're doing to improve the support that’s available.
SH: It is really important to think about this from an industry point of view. A lot of smaller publishers, might only have one person with a disability. From an industry point of view, how can we empower people to make changes and solve problems within their own company, as opposed to just doing it on an individual company level? A conversation where the whole industry takes part is how we will bring about meaningful change.
Starting conversations and making real change happen
MK: KIRSTY, what was the feedback you got from SN DEN?
KB: We celebrated the official UK launch in April and were joined by guest speaker Steve Tyler, Director of Assistive Technology at Leonard Cheshire. Our main goal was to highlight the network to those that may benefit from it and to show employees without disabilities or impairments that they themselves should and can still support the network. It’s open to those who support someone with a disability or impairment or just wish to learn more about how they can make their team feel more comfortable having these sorts of conversations. We’ve had a great response and are hoping to move forward with various sub-groups to drive and implement changes where needed.
SN DEN is a global network, but our April event was for the official launch of the UK chapter. We’re now working with colleagues across other countries to support offices across the globe.
MK: SIMON, what kind of comments did you get on the Scholarly Kitchen article?
SH: The comments were really positive, encouraging and insightful. Several people asked us what practical steps they should take to increase disability inclusion, so we are hoping to cover those in a future Scholarly Kitchen piece. The key here is also getting the business benefits message out there, as that helps get buy in for inclusion, and also make clear that a lot of the solutions are free or very cheap, so are not restricted to large companies. If we can get these messages across, it’s the first step towards creating a more inclusive culture across the industry.
MK: And I don’t want to steal the thunder of your follow up article, but is there anything you could share already in in this interview, call it a teaser or a preview about the practical things that publishers, or publishing companies, or the publishing industry should do?
SH: A few things I would highlight:
KB: I think the important point for me is educating individuals to understand that accessibility and inclusivity isn't just about ensuring buildings and offices are accessible for those with mobility impairments. Small and relatively inexpensive examples would be installing hearing loops in meeting rooms and conference centres for those that are hard of hearing and incorporating regular breaks into long meetings or events.
MK: Which is good really for anybody, right?
KB: Exactly, it’s about educating people to understand that these changes can benefit everyone, not just those that identify as having a disability or impairment.
SH: That’s such a great point. Once you’ve installed the equipment, like hearing loops, it means that you are then in a position where it's easier to employ, say, hearing impaired people in the future. The ultimate aim is for companies to stop being reactive and put processes in place and become more future ready. Disability Confident, that I mentioned earlier, gives organizations the framework to embrace this.
MK: You did mention this issue of people making assumptions and it reminds me of when I joined the Accessible Books Consortium board. I had a colleague who joined at the same time, and wanted to contact some of the other board members who were blind and then he asked, I guess I can’t send them an email? I said, Just try because I think it all works fine. Of course the blind people answer first.
That assumption that a blind colleague cannot read email so we need to make special arrangements is what happens if we don’t talk about this out in the open. How would you address that point?
KB: As with many other diversity and inclusion topics, approaching the issues around disability requires a twofold approach. Firstly, staff need to have the opportunity to be educated on disability within the workplace. How can we start these conversations and remain mindful of the individual needs within teams? But also, we need to empower the individual themselves to feel comfortable speaking out without fearing professional repercussions or judgment.
I have an ‘invisible’ illness - outwardly I look like a healthy individual. If I don't speak out about needing any adjustment or say that I simply can't do something, people tend to not start a discussion at all. From my experience, people with a chronic health condition often have unparalleled resilience and determination which means, as you pointed out, they can often refrain from speaking up during an uncomfortable situation for fear of feeling vulnerable. This can often mean that their struggles go unnoticed. We need to encourage people to ask the difficult questions.
SH: That's 100% right. It's about changing the way we think about this, empowering people to speak out, but also making both employers and employees think about the kind of skills people learn as a result of dealing with a disability, which can then be applied in the workplace. Until I really sat down and thought about the skills that I've gained from having a disability, none of that would have occurred to me. I have gained resilience, resourcefulness, problem solving and relationship building.
How is publishing doing compared to other industries?
MK: You mentioned the Publishers Association report demonstrating under-representation which is remarkably low, although they put it in a context where the BBC has a target of 8% in 2020, and KPMG is at 3% in 2018. What are your perspectives on this?
KB: There is a problem across all industries, not just publishing. Making recruitment platforms compatible with assistive technologies is one aspect that would definitely affects numbers.
But also, not everyone self-identifies as having a disability, so it is also about how we ask. At the start of my career, if I was given a company survey, even it was anonymous, I would have said “no” through fear that it would impact my professional standing. We may not necessarily be underrepresented in the proportion of staff employed, but in the people that feel comfortable discussing it.
SH: Disability is a little different to other demographics in that there are those who can hide it and those who can't. KIRSTY has an option of not disclosing, which is unavailable to me because if people don't know I’m visually impaired, I won’t be able to get the adjustments I need to do my job.
If we flip it around, though… What has the publishing industry done to actively include people with disabilities? We have a long way to go in that regard.
The publishing industry is at the start of this journey. There is more willingness but if you want to recruit more people with disabilities, you have to go out and get them – in exactly the same way as you would try and recruit more people with, for example, a computer science background. If this is a demographic you want to include more people from, you need to go about not only proactively trying to recruit them, but also making sure you have the systems with your workplace to support them properly.
KB: This is why employee networks, such as the Springer Nature Disabled Employee Network and Elsevier Enabled are so important because there is a tendency for people to think “Oh, it doesn't affect me, so I don’t need to look into this further.” There’s also a responsibility for people that feel comfortable discussing these issues to raise awareness within their own companies and try and make the change to support others.
SH: This also feeds into a wider context. Disability affects a lot of people, whether it's because you have a disability, or because a family member does. You might need to work flexibly, because you have to take care of a dependent, whether that’s a child or a parent or another relative who has a disability. Many of our customers also have disabilities, as do our colleagues – it’s part of what it is to be human. So when we are talking about whether we are representative, inclusive or not inclusive, it's not just about the amount of people with disabilities you have in your organization. It's about looking at this from a community perspective: are we inclusive of people whose lives are affected by disability, in whatever way?
MK: Which other industries are successful and could be a source of inspiration?
SH: If you look at Microsoft and IBM, they really are the leaders here. Microsoft have a market-leading inclusive hiring policy, and specifically target people with autism as computer programmers, as they recognise the skills they bring to this area.
If, as a recruiter, you are looking at what skills and qualities people with disabilities can offer, as opposed to drawbacks, it allows you to be more inclusive in your hiring. Thinking about different kinds of publishers and the skills that people with disabilities might have that could help. I'm a Commissioning Editor and a lot of my job involves meeting people and engaging with them. Due to my disability, I am used to going up to strangers because I have to, because I can’t read somebody’s name badge. Being visually impaired has helped me succeed as a Commissioning Editor. That’s the way we need to look at it, and how the tech sector is already thinking about this.
KB: As a publishing industry, we pride ourselves on our communication. I think we have the perfect platform to communicate this information and to impact all industries. For example, between Springer Nature and Elsevier, we publish huge quantities of research on disabilities, chronic illness, and social economics - the whole broad picture. I think as publishers, it would be great to also highlight these articles for wider professionals.
MK: The UK PA report breaks out different types of disability or impairment. Most are around 10% but mental health is at 25%. I was shocked that it was such a high number. And that's an invisible disability. Any views from your side?
KB: There is definitely an ongoing movement around health and wellbeing, both of which also cover mental health. At Springer Nature, our wellbeing and disability networks work in close collaboration.
Those with a physical disability or impairment can also experience mental health issues or illnesses and vice versa. We should look at the complete picture, as opposed to focusing on different areas.
SH: I’m really heartened to see Elsevier’s increased focus on mindfulness, wellbeing and mental health. I look at the circles of disability and mental health and wellbeing, as one.
MK: Isn’t the taboo larger for mental health?
SH: This was definitely a concern for me earlier in my career, and I think it definitely held me back, if only subconsciously. I also think there were people who assumed I wasn’t able to do parts of a job due to being visually impaired. It’s about educating everyone to think a bit differently, and think about outcomes, rather than being prescriptive about how you get there.
KB: It comes back to educating those who are worried to discuss things that they may not fully comprehend. If you are an otherwise healthy individual, you may see an issue with someone in your team restricting them from reaching their highest potential and you should feel comfortable starting the conversation. As an example, I experience extreme fatigue. It affects my travel and attendance to long meetings or conferences, but I try to adapt where possible. I think if more people were open about the limitations they experience, there wouldn’t be such a stigma attached to asking for more support.
SH: I see it as a pathway: awareness, education, policy. The first thing is to raise awareness of what the issues are. I feel we're on that journey at the moment. The second part is education, which obviously follows on from awareness in terms of ‘these are the issues, how do we mitigate those? How do we best work with people? How do we work best to help people fulfill their potential?’ The third one is policy, which includes flexible working policies, recruitment policies, or training courses.
MK: I attended a meeting of senior LGBT leaders recently. A focus group asked about, sponsors, mentors and role models that helped us in our career. There was a long silence. I did not have any LGBTI role models in the corporate world to inspire me: they simply weren't there.
What about role models in the industry when we talk about disability? Are there any CEOs, which also have a disability and show that you can run any company and your personal life, and also have a disability, whatever that is?
KB: Steve Tyler, Director of Assistive Technology at Leonard Cheshire and our external speaker for the SN DEN UK launch is a prime example. He engages with local and international governments and companies on policy and aims to educate workplaces on accessibility and the skills that disabled employees can bring. A great example was his experience working as part of the development team for synthetic speech (leading to the voice of Alexa). Although initially designed as an assistive technology for impairments, this feature is now used by many consumers and has benefitted all.
SH: It’s a great question. We’ve moved on a lot from when I was at school, and it was a fight for my parents to send me to a mainstream school. Back then, if you had a disability, especially something like a hearing or visual impairment, you went to a special school, which meant little contact with the outside world. When I finished University, 74% of working age visually impaired people in the UK were unemployed. Unfortunately, that figure isn’t very different today.
So my role models were people who had jobs. That was my big career ambition - it wasn’t about being a CEO; if you have a disability, you're not really allowed to think as big as that. To be employed in itself is to be a success.
Things like the Paralympics have been really empowering but the biggest change has come about as a result of the #MeToo movement. While it started out meaning ‘I'm a victim too’, I’d like to think it has taken on an additional meaning of ‘I have a voice too’. This has allowed other people and groups, like PRIDE or disability, to gain a greater voice. So when I think about role models, I don't think about people in the disabilities space because I don't really see public figures there I relate to. Perhaps that says something about the lack of public figures with a disability.
I think people like Kirsty and I are the first generation in our industries able to speak out. Instead, I look at people who have broken the glass ceiling in their spheres. So my role models are people like the Obamas, for example, or Tom Daley, who is one of the first openly gay, successful athletes in the UK. Or people in music or sport who come from unlikely backgrounds – people who were told they couldn’t do it, but did it anyway. These people changed things, and made it easier for the next people coming through. If we can do a bit of that in the publishing industry, that would be brilliant.
KB: I also believe that managers can be just as inspiring. I've been really lucky within Springer Nature to have had a succession of supportive managers and I know not everyone experiences that in their career. When colleagues or friends have asked how I approached the topic of extra support, it really has been down to having a manager that encourages me to highlight any issues, listens and works with me to make my working life as balanced as possible. People like this that can often go unrecognized but make such a difference. The same can be said for professional mentors as well. Sometimes just speaking with someone that is in the same industry as you and, as SIMON said, has already broken a glass ceiling or is in a position to offer some type of support can be really inspiring.
Additionally, across all diversity and inclusion topics, if you feel comfortable speaking about your situation, it can give you a platform to be able to help others. Some individuals want to remain anonymous and it’s incredibly important to keep that anonymity if desired, but I think that the rest of us that do like speaking about it and do want to try and educate people should give a voice on behalf of the community.
Wrapping up - opportunity
MK: Were there any questions you were expecting me to ask and I didn’t ask? Or, were their points you wanted to make and you didn’t have a chance to make?
KB: I’d really like to mention a quick anecdote and another simple way in which we could all make industries more inclusive. I worked closely with a colleague for about six months and throughout that entire time sent across numerous fully color-coded presentations and reports. At the six month mark, I coincidentally started a conversation about disability and impairment in the workplace and they confided that they identify as having color blindness. Immediately, I felt awful and asked why they hadn’t mentioned it before. They echoed the sentiments of many with “I found a way of working around it so I didn’t feel the need to disclose it.”
While I completely agree with not disclosing personal information if you do not want to do so, I also think this comes back to people not yet feeling comfortable enough to say “Actually, could you possibly send this to me in a different format?” Across businesses and our personal lives, it really is quite simple to use inclusive slide decks or color schemes. Even if these aren’t easily available to you, just ensuring that charts have different patterns or coding alongside the various colours can make such a huge difference and is a small change that we could all make.
SH: The one thing I really want people to take away is, that the next time a person with disability comes into your office for an interview, I really want the hiring manager to see somebody who's resourceful and resilient, is good at solving problems, is possibly quite good at building relationships and will probably stay at your company for quite a long time, because of the challenges that once you set up properly - you don't really want to have to do that again all the time. That’s what I’d like everyone reading this to think about.
KB: It's important for readers to not necessarily focus on feeling sympathetic. I wouldn’t want anyone to read this post and think “goodness, these people have a terrible time.” We all just want to be seen as an asset to the team as much as anyone else, but we may just need to approach things in a different way.
SH: Yes, and the worst phrase I get is often the proverbial pat on the head is ‘haven’t you done well.’ Yes, I got out of bed this morning and went to work. Just like everybody else.
KB: A phrase I often get is “Well, you don’t look disabled.” Honestly, what does that even mean?
SH: Exactly, what does that mean. It's about taking people for who they are. With all their qualities and flaws. And actually having a disability is just part of that.
MK: Thank you Simon and Kirsty!